ERN-RND – Page 10 – ERN-RND | European Reference Network on Rare Neurological Diseases

EURORDIS Winter School 2021

Continue reading “EURORDIS Winter School 2021”

22 July 2020 | World Brain Day

Continue reading “22 July 2020 | World Brain Day”

Share4Rare – new international patient registry for COVID-19

Continue reading “Share4Rare – new international patient registry for COVID-19”

2020 CEF Telecom call – eHealth open

Continue reading “2020 CEF Telecom call – eHealth open”

EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

Continue reading “EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)”

#BrainLifeGoals campaign on World Brain Day 2020

Continue reading “#BrainLifeGoals campaign on World Brain Day 2020”

11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience

Continue reading “11-15 July 2020 | (Virtual) 12th FENS Forum of Neuroscience”

14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes”

Continue reading “14 July 2020 | ERN-RND webinar “Gait rehabilitation in people with Hereditary Spastic Paraplegia & Respiratory physiotherapy in parkinson’s plus syndromes””

NEW ePAG patient advocate for Leukodystrophies from Germany

Continue reading “NEW ePAG patient advocate for Leukodystrophies from Germany”

9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia”

Continue reading “9 July 2020 | ERN-RND webinar “Environmental modifiers in Hereditary Spastic Paraplegia””

Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Continue reading “Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia””

ERN-RND July 2020 Newsletter

Continue reading “ERN-RND July 2020 Newsletter”

SCA & ARCA Global online Conference – registration is open

Continue reading “SCA & ARCA Global online Conference – registration is open”

30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia”

Continue reading “30 June 2020 | ERN-RND webinar “RCT on intrathecal baclofen for dystonia””

30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies”

Continue reading “30 June 2020 | EFNA webinar “Where’s Neurology? Influencing Covid Recovery Planning, Programmes and Policies””

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

Continue reading “EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data””

Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Continue reading “Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2””

18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation”

Continue reading “18 June 2020 | ERN-RND webinar “Goal setting and outcome measures of interventions in pediatric rehabilitation””

18 June 2020 | Webinar “A data strategy for the European Reference Networks”

Continue reading “18 June 2020 | Webinar “A data strategy for the European Reference Networks””

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

Continue reading “Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant”

15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting

Continue reading “15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting”

16 June 2020 | Webinar “Advancing the rare disease research agenda”

Continue reading “16 June 2020 | Webinar “Advancing the rare disease research agenda””

EPNS 2021, abstract submission open

Continue reading “EPNS 2021, abstract submission open”

6-9 June 2020 | ESHG 2020.2 – Live in your living room

Continue reading “6-9 June 2020 | ESHG 2020.2 – Live in your living room”

9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS

Continue reading “9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS”

NEW Euro-HSP Facebook page

Continue reading “NEW Euro-HSP Facebook page”

ERN-RND June Newsletter 2020 – CORRECTION

Continue reading “ERN-RND June Newsletter 2020 – CORRECTION”

EJP RD fellowship awarded to ERN-RND member

Continue reading “EJP RD fellowship awarded to ERN-RND member”

Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study”

Continue reading “Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study””

Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey”

Continue reading “Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey””

Clinical Practice for Primary Progressive Aphasia (PPA) – Interview with Robert Rusina
May 5, 2025
It takes „about one year from the first symptoms to the first consultation of a physician, and another one year …read more »
Survey on Myoclonus Dystonia Syndrome
April 10, 2025
Myoclonus-dystonia syndrome (MDS) is a genetic movement disorder with childhood-onset, most frequently caused by SGCE defects. For this survey two …read more »
The Importance of Newborn Screening for Metachromatic Leukodystrophy (MLD)
April 7, 2025
MLD is a neurodegenerative disorder, that affects children at a very young age, leading to a premature death. In a …read more »

Find us on Bluesky

Get to this post

Der Code des Lebens @dercodedeslebens.bsky.social 4 days

📣 Neue Folge: Von Basenpaaren und Bytes
Das menschliche Genom hat 3 Milliarden Basenpaare – eine riesige Datenflut, die nur mit Bioinformatik zu bewältigen ist. Camill Kaipf erklärt, wie man in dieses Feld kommt und warum eine sichere IT-Infrastruktur so wichtig ist.
🎧 t1p.de/xebt4
Get to this post

The German Human Genome-Phenome Archive @ghga.bsky.social 1 week

🎬 In case you missed our webinar on Benchmarking and quality control for genomic variant calling with Johannes Köster., you can now watch the recordings on our Training Website: www.ghga.de/resources/tr...
The slides are also available on GHGA GitHub: github.com/GHGA-Trainin...
Get to this post

ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 2 weeks

Erksplain - Kidney Transplantation 🚨

Kidney transplants save lives — but the average wait is 6–8 years.
Deceased donors are matched by urgency and compatibility.
Most people can donate — just register or tell your family! 💡

Organ donation = a true gift of life. 🌍

#KidneyTransplant #SaveLives
Get to this post

ERN-RND @ern-rnd.bsky.social 2 weeks

💻 U#webinar#webinar on “Recent Advances in Clinical Trials in Multiple System Atrophy”
📅 20th May, 3:00 CEST
🗣️ David Bendetowicz, University Hospital Bordeaux, France
Sign https://t1p.de/ri7k3de/ri7k3
Joint with the European Reference Network for Rare Neuromuscular Diseases and
Get to this post

ERN-RND @ern-rnd.bsky.social 2 weeks

💻 U#webinar#webinar on “Neurogeriatric Aspects in Rare Forms of Ataxia and HSP”
📅 13th May, 3:00 CEST
🗣️ Eleni Zamba-Papanicolaou, Cyprus Institute of Neurology and Genetics
Sign https://t1p.de/v8r2hde/v8r2h
Joint with the European Reference Network for Rare Neuromuscular Diseases and